What parents teach us about congenital heart disease beyond the hospital

Parents' lived experiences shape this discussion on congenital heart disease (CHD), moving beyond clinical outcomes to explore the emotional and everyday realities of raising a child with a heart condition. Drawing on qualitative research, Dylan Nemes shares what families told his team about navigating diagnosis, surgery, the transition from hospital to home, and the long-term uncertainty that can follow.

The discussion highlights the importance of family-centred care, the lasting emotional impact of CHD on parents, and why supporting caregiver well-being is essential to children's health and development. It also examines the role of physical activity in the lives of children with CHD, where gaps in guidance can exist, and how listening to families can help improve care, communication, and support.

Learn more about the topics discussed in this episode:

Growing up with congenital heart disease: A qualitative research study of parents’ and clinicians’ experiences and perspectives, CJC Pediatric and Congenital Heart Disease

All episodes written and produced by the Research Communications team at BC Children's Hospital Research Institute.

Theme music: "Life Is Beautiful" by Anastasia Kir

Transcript

Kristen Hovet (00:00)
I'm Kristen Hovet and I'm the interim Research Communications Manager for BC Children's Hospital Research Institute. Joining me today is Dylan Nemes, a fourth year medical student at UBC and a member of Dr. Christine Voss's team at BCCHR. We'll be talking about their team's qualitative research covering parents' lived experiences of raising a child with congenital heart disease, including how these families navigate life beyond the hospital, and why listening to parents' stories is so essential to helping kids with congenital heart disease thrive.

Dylan Nemes (00:37)
My name is Dylan Nemes. I'm a fourth year medical student at the Southern Medical Program at UBC. That's located in Kelowna. For the research that we're going to talk about today, I was a research assistant with the Centre for Chronic Disease Prevention and Management also in Kelowna.

Kristen Hovet (00:55)
What first drew you to congenital heart disease research?

Dylan Nemes (00:59)
Yeah, the research actually predated any of my clinical experiences with pediatric patients or cardiology patients, because I started it kind of before our clerkship period. But we get a base level of teaching in medical school. So I knew around like the severity, how much impact it could have on a patient's life. ⁓ In my personal life, like I know a couple  people with very mild cases of CHD. So I had a sense of the prevalence, about one in a hundred kids is born with CHD. But really when the opportunity came, I was just really excited to be involved with Christine's lab and I thought the project sounded like it was going to be very impactful. I'm all about projects where we can hear from patients and patient families and that's what excited me most and I know that because CHD is such a large diagnosis and impacts so many facets of a patient's life that it was going to be impactful work.

Dr. Christine Voss is a researcher at the CCDPM. She's also connected to UBC's Department of Pediatrics. And her lab mostly focuses on children with CHD and primarily actually children with diabetes. And so a lot of her work is focused on kind of a pediatric population and how these chronic illnesses are impacting how these kids grow up and what sorts of things they experience,

and trying to optimize what their lives can look like based on what sort of medical technology and medical recommendations we can make.

Kristen Hovet (02:36)
The study we're talking about today focuses on parents' lived experiences. So we're not really talking about the medical outcomes of their children as much. What made you and your team decide that qualitative research and listening to parents' stories was such an important place to start?

Dylan Nemes (02:55)
Yeah, that's a good question. Specifically in this space, one of the overarching things that we wanted to explore was physical activity within the population. So there is a lot of research and Dr. Christine Voss herself has done research in this space around the positive impacts or just generally the impacts of physical activity on kids with CHD. And it's well established that it's very positive. But there's a little bit of

discord kind of in this space as to what's the best way that we can promote physical activity. I don't think that there's a well established way to get kids active, specifically kids with CHD. And there's not much research out there that's asking families and kind of identifying what are we missing? Why are kids not being active? Is it something to do with the care team? Is it anything to do with their medical care?

Their actual ability to just do physical activity? We wanted to get a better sense of what that was from the parents' perspective. And then part of the study was also interviewing clinicians who work with kids with CHD and compare those two perspectives and see whether there was any discord or whether they aligned well maybe identify any areas for improvement. Kind of a core to the research were semi-structured interviews. So we had a list of questions that we kind of

wanted to get through and the way that they worked was chronologically. So at the same time that we were asking these patients questions, we're completing a timeline map, which would outline key events in that patient's life. So it just looks like, you know, a timeline with little plot points along the way. And after the interviews, I would send these timelines to parents and they could correct me as to whether there was any

corrections to be made, anything to add. And so what that let us do beyond actually having that face-to-face time, it kind of gives you an overarching sense of the patient's life. And we would divide the points into like, this is like a clinical life point. This is something in their personal life that happened. This is like a key physical activity point. And that was helpful when actually doing the thematic analysis of the research. We completed all the interviews and then we did our reflexive thematic analysis, first

just to keep us grounded and give us a chronological sense of each story as we came up with some of the themes.

Kristen Hovet (05:29)
Speaking of themes, one of the strongest themes in the study is parents feeling overwhelmed, especially early on. From what families shared, what parts of the congenital heart disease journey felt most overwhelming or traumatic and why?

Dylan Nemes (05:44)
I think there are two kind of major points from the families' perspective. The first would be diagnosis. The majority of the children were diagnosed before birth while the parents were pregnant. And so that was a really like overwhelming point for the parents, but often they felt supported. They felt like they had sufficient meetings with their team to kind of explain, you know, what...

the team was going to expect, what they were going to experience at the time of birth, and how things might look after that.  But of course, in medicine, there's always a lot of uncertainty. So in spite of all that, they still can feel somewhat overwhelmed and it's a major diagnosis that is going to impact the life of their child as well as their own lives. So I think it was a lot for parents to think about in what is generally a very exciting time in their lives. And then the second

major source I would say was surgery. Anytime a child has a surgery, leading up to the surgery, parents would get quite overwhelmed. The outcomes aren't guaranteed and so there was a lot of stress for parents. And in the time after surgery, you're kind of in limbo for a while while you're still figuring out whether the surgery had the sort of positive impacts that you want it to.  And then the recovery time for... most of the

 children had surgeries as babies and it was really difficult for parents to see their children recovering from surgery and oftentimes felt overwhelmed by having to do that at home. Like as soon as they have to be discharged from the hospital and continue the majority of their care themselves without the support of nurses and other clinical staff, then they would feel overwhelmed and maybe underprepared in those first early stages of raising their child,

and helping them recover from surgery.

Kristen Hovet (07:38)
Right, and I can think of some questions that listeners might have and that might be, you know, why is it a problem that parents are feeling these things? Why is it a problem if they're overwhelmed? How does this potentially impact their children? Is that the concern there?

Dylan Nemes (07:55)
Yeah, definitely. I think our paper kind of outlines some of the existing research that there is out there that's shown that when parents are overwhelmed to the point of, you know, they might be depressed, they might actually have like a clinical diagnosis of anxiety. Those sorts of things also impact their children and impact their children's development and unfortunately, you know, it's a negative impact on their children's lives. So if

there's anything that the care team can do to improve the lives of parents while their children are growing up, it's gonna improve the holistic care of the child. And so I think that was also an area that our research kind of uncovered and was flushing out was how can we improve these parents' lives early on and then throughout the course of their child's lives.

And so one of the things that we focused on was a lot of the parents felt like the care team did an exceptional job of caring for their kids and making sure their kids' health was well taken care of, but maybe they felt like they weren't being asked about their own health as much as they would like. There's a few parents who were offered support through a therapist or somebody at BC Children's who could offer them...

psychological care very early on after surgery or after diagnosis, but a lot of the parents felt like that wasn't the optimal time to receive that care and that, in hindsight, they would have liked it a little later on in process once they felt a little more settled and maybe ready to start that process because they continued to feel overwhelmed and anxious later on, but very early on, they weren't ready to see anybody about it yet.

Kristen Hovet (09:41)
I know several parents described a sharp transition from hospital to home where suddenly they were on their own in many ways. What gaps did parents notice once they left the hospital with their child?

Dylan Nemes (09:54)
BC Children's does a good job of assigning a nurse to families, somebody to be in touch with and get a hold of if they have questions. And so I think that was helpful for parents. But generally, you're going from having around the clock medical teams being able to assess your child to having to make decisions about whether your child is well or unwell on your own. And for some of the parents, they were  first time parents, so it's not just

can I assess a child who has a cardiac defect, right, they're not even familiar with what a child without a cardiac defect looks when they're well and unwell. And so a lot of the parents felt quite overwhelmed by that task and it took time. And I think some of them talked about how they would have liked maybe more teaching on, you know, what truly  does a sick

child look like and some of them felt like maybe they didn't go to the hospital early enough. For example, a baby is like struggling to, you know, grow because they're using too much energy breathing because of their cardiac condition and like they're metabolizing too much because of the demands of their heart and they couldn't really tell that quick enough until they noticed that their child isn't growing and so some of them felt that maybe they needed a little more education on that front. And

there were other parents who felt that they did have sufficient resources because they're given binders and pamphlets and those sorts of things. And then there were other parents who talked about how they would do their own kind of research with Google, and oftentimes they felt like that just ended up making them more anxious because they didn't really know what answers pertain to their specific case. And so they wanted maybe a more curated

set of links to look at that were more specific to their own case.

Kristen Hovet (11:51)
Your study included families living far from BC Children's Hospital. What challenges did parents in smaller or more remote communities describe when it came to accessing care and support?

Dylan Nemes (12:04)
So one of the major issues that these parents ran into was that the staff in their smaller community hospital had less experience with pediatric cardiology, with congenital heart disease defects, especially some of the more rare conditions. And so they felt like the staff might try to figure things out on their own. And some parents felt like they had to advocate for, hey, please get in touch with BC Children's Hospital. You know, there is a plan 

in place for my child if you can get in touch with them. And they just felt like they had to be a little more involved than they might otherwise have to if they were able to be in the lower mainland and have direct access to specialized care. Another thing is these families, especially in the interior, so we had a few families in the interior, they're having to wait longer times between each cardiology visit because the cardiologists are coming certain times of year. They might have to travel to another

town closest to them to see the physician at the hospital that they're traveling to for that specific month. And they talked about how the cardiologists that comes might differ. And so they might've had questions and conversations with one pediatric cardiologist and then felt like they had to have those same questions and conversations like from ground zero with the next pediatric cardiologist. In one case, they felt like the opinions differed. And so it left them a little bit confused though, generally,

they felt like the care provided was just as strong as at the hospital, at BC Children's Hospital.

Kristen Hovet (13:40)
Parents spoke very honestly about the emotional toll of CHD, not just at diagnosis, but years later. So we did speak a bit about this, but what kinds of long-term emotional impacts did families share with you?

Dylan Nemes (13:55)
Yeah, I think that the major one that came up again and again was this sense of anxiety that parents had. And the majority of parents I spoke with were mothers and they basically felt like there is a base level of worry anytime their child is out in the world, you know, being active or even just in their room sleeping at home where they worry, you know, is their heart gonna affect what they're doing right now? Is my child...

more sick than I know? And so I think having this diagnosis kind of adds a level of stress and anxiety that these parents were often still thinking about many years later. They were worrying about whether, even after a surgical repair where they've been reassured that things should be

okay going forward, whether their heart was still going to become an issue later on. Sometimes as the appointments became further and further apart, you know, as a child goes into their teenage years and they haven't had surgery for years, they're seeing their cardiologist every year or even less, and they felt that maybe they needed a little more reassurance because they weren't sure whether being, you know, a young adult was going to change their child's heart's ability and whether things were going to get worse.

Kristen Hovet (15:13)
Physical activity is one major focus of the study, as you mentioned earlier. Can you describe the importance of physical activity for kids with CHD and what surprised you most about how parents and clinicians think about exercise for this population?

Dylan Nemes (15:30)
In general, physical activity is like one of the best tools for anybody to stay healthy and to improve their health if they're not currently physically active. And that extra applies to children with CHD who are just at a higher risk of having acquired heart diseases on top of their congenital disease. Physical activity just keeps the heart healthy in such a productive way like nothing else can. And so it's something that, as clinicians at BC Children's Hospital,

they focus a lot of their visits on that. And at BC Children's Hospital, they have an exercise physiologist, so somebody who's just focused on the exercise. The way that the clinicians kind of across the board talk about it, like they all thought that exercise was important. They're all very well-read and they understand the importance of exercise. And they would talk to their patients and the patients' families about exercise.

But there was a little difference in maybe their approach to how they would do that. So some clinicians, for them it was something to talk about and bring up every visit. For other clinicians, they, you know, weren't bringing it up as much until into the toddler years perhaps. And then for some, bring it up early for a bit and then it kind of falls off until closer to the teenage years, which is typically when these kids slow down in their activity and stop being as active as they once were.

And then from the families' perspective, I think something that was interesting was I had a variety of ages of the children, and so one of the patients with CHD in their thirties, and so I was speaking to their parent. The sorts of things that their parent were talked to about for physical activity was so minimal compared to some of the more recently born patients with CHD. In that way, I mean, I can't extrapolate based off

just a few patients, but it felt like maybe there's a trend to talking more about physical activity now as compared to 30 years ago. The families with kids with CHD who were under two talked about, hey, like my pediatric cardiologist told me that my child's not gonna have limitations to physical activity. They can be an Olympian if they want. And that stood out to me because that was something that was an exact example clinicians used when they talked to me about it. So,

clearly they have a little bit of a formula that they get across and that resonated really well with that parent. But yeah, generally the parents in our study felt that they were reassured about physical activity and to promote it as much as possible.

Kristen Hovet (18:07)
I do recall reading in the paper something about the importance of role models and including professional athletes. So was that something that, even for like a young age group, that would be very helpful?

Dylan Nemes (18:19)
Yeah, I think what came up was even though a parent might hear, my child is allowed to be physically active, they might still feel that there are some limitations even if it's just subconscious. And so the clinicians tried to bring up examples. And so they use Shaun White, you know, the snowboarder, he has CHD. They used him as an example of like, hey, your child could be at the highest level of physical activity. It's really not going to hold them back. Just let them

try to be as active as possible. If they're having issues doing that, then that's something we can work on to fix together if they're symptomatic. But until that point, just let them be as active as possible. And so that really worked well. And then other parents talked about just having other role models within the child's life, not necessarily with CHD, but just to have good models of healthy living and being active. For one family it was,

you know, their child would have that time with their uncle going mountain biking. And that worked really well to keep them active, just having people in their life who were physically active, who were role models for physical activity.

Kristen Hovet (19:31)
And to switch gears, for parents listening right now, maybe they're experiencing a new diagnosis for their child and maybe they're feeling overwhelmed. What's one key message you hope they'll take away from this episode?

Dylan Nemes (19:44)
I think that the number one message is that you're not alone, even for the most rare conditions where it feels like your case is one in a million, nobody in your community is living the same experience that you are. There are good networks online that can connect you with other folks. And unfortunately, these networks are strongest in the lower mainland. So it's a little harder for those who are away from there, but there are people to connect to, at least online,

to share your experiences with and be able to talk to people who are living or have lived what you are living. The parents who did do that expressed how valuable they found that. And so I would really just encourage parents who are listening to this and feeling overwhelmed to reach out to that network because it can be very valuable.

Kristen Hovet (20:36)
What's next for this research, in particular, or for your team?

Dylan Nemes (20:40)
Yeah, for this research in particular, kind of a sister study to this is now complete. It's just being written up. We're to have the same sort of semi-structured interview timeline questions for kids who are growing up with type 1 diabetes. And I think all of the interviews are now done and they're just synthesizing the work and coming up with their themes. And so I'll be really excited to see what the results of that are and how they compare to

the lives of children with CHD. They are very different conditions, so I'm sure there'll be a lot of exciting differences.

Kristen Hovet (21:14)
And a question that we're asking all podcast guests, how does your research help children live their best lives?

Dylan Nemes (21:22)
I think the way that our research specifically does that, it gives voice to the parents and the families and lets them be heard in the research space. So often we get kind of focused on statistics and the power of a study and how the difference in the number can make an impact on us, and how we prescribe treatment, and that sort of thing. But our research keeps us grounded in the actual experience of the people living through it,

and gives us some more nuanced insight into those things. And so I'm hopeful that what we presented is going to continue informing other researchers and eventually policymakers into supporting children with CHD. I would just want to say thank you to everybody who participated in our study. They were all so gracious  and kind to share their stories and then as well as the clinicians, they're obviously so busy. So I really appreciated hearing from them as well.